Gasp! DNA data! Privacy!!

Someone might find out....something!!!

Why this matters to women: Odds are high the kids, the grands and a bunch of relatives you’ve never heard of already have your DNA—or SNPs of it—on a genealogy site or three, so we all ought to be thinking about this. And IMO women like to think ahead on wellness and diseases—not just blithely go through everyone’s lives without knowing what’s going on in those bodies, merrily assuming everything can be cured later. Regeneron joins universities and other organizations churning out breakthrough studies on early identification of disease risk that could impact someone we love—think heart disease, cancer and hundreds of other diseases—with earlier, better treatments and potential cures. And if a rare genetic disease runs in your family, you should be even more intrigued.

Alert!! Alert!! DNA data on the loose!! (“What is that?”)

The possibility our DNA data—whatever we think it is—falling into the hands of nefarious actors often causes an immediate case of the vapors.¹ Like everything else in life, we’d rather keep it to ourselves. You know, like our credit card and social security numbers—and we know how well that’s working out. But if you think about it, it’s far more likely that a hacker can immediately use credit card numbers than DNA data. Stolen credit card numbers are used in seconds. Shopping for someone who wants DNA data files for (already highly regulated) medical research? Not so much.

In online survey this year, 21% of respondents had personally taken a genealogy DNA test, with another 42% noting someone in their family had taken one. The most common type of genealogy DNA test—autosomal, the type offered by 23andme—reveals genetic relationship data back five to six generations, or about 150 to 180 years. On average, that’s DNA data of 62 direct ancestors of the test-taker, going back to great-great-great-grandparents, with some percentage of DNA for each. But if you’ve seen DNA results, it’s actually many more hundreds of DNA relationships—because those ancestors all had other kids…whole family trees of hundreds of people you never knew existed until those DNA results show up.

Bottom line: if someone in your extended family took a DNA test, the odds are more than 60% that pieces of your DNA are already widely available to a whole lot of hobbyists and researchers. Which is how Investigative Genetic Genealogy (IGG) is being used by law enforcement to close cases from even 50 years ago, by putting together multiple pieces of DNA data, not just using yours. Here’s how that was used to identify the suspect in the Idaho killings.

DNA brought new meaning to “you can run, but you can’t hide,” and surveys indicate from half to 60% of Americans agree DNA data should be used to solve at least violent crimes. And while that use can raise concerns among some, a far more common experience is the excitement of discovering family relationships and ethnic ties with the hobby of genealogy, rumored second only to gardening (or maybe porn) in popularity.

Or, for adoptees, finally getting some idea of family medical histories before risk develops into serious, unexpected illness—a significant benefit and one at which 23andme excelled.

But…aren’t there risks?